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IBD Registry COVID-19

Population Size

9,800

People

Years

2020 - 2021

Associated BioSamples

None/not available

Geographic coverage

United Kingdom

Lead time

Not applicable

Summary

A consented IBD dataset of 9,800 participants, with a further 30,000 ethically-permissioned records for research related to COVID-19 and IBD. Includes patient demographics, medications plus vaccinations, responses and care received April 2020-June 2021.

Documentation

The Registry has captured a consented research dataset from 9,800 patients with a further 30,000 ethically permissioned records for research related to IBD and COVID-19. This includes patient demographics, medications; plus vaccinations, responses and care received during COVID-19 period April 2020-June 2021. The original source of the data was the IBD Registry's COVID-19 IBD Risk Tool, which was launched at the start of the pandemic (1 April 2020) to allow people with IBD to self-assess their risk. It had a high uptake, with over 16,000 people completing it in the first week alone; by the first end of shielding in August 2020 ovr 37,000 people with IBD had completed it. Ethical permission was sought and received to re-contact participants for use of this data in research relate to IBD and COVID-19, along with a follow-on survey to give a second timepoint about one year later, which was by June 2021. 9,800 people consented and completed the follow-on (second timepoint) survey, with the ethical permissions allowing the original dataset (first timepoint only) to also be used in research under more restricted permissions providing all requests for withdrawal fulfilled.
Dataset type
Health and disease, Treatments/Interventions
Dataset sub-type
Oral and gastrointestinal, Respiratory
Dataset population size
9800

Keywords

Inflammatory Bowel Disease, IBD, COVID-19, SARS-CoV-2, immune-mediated inflammatory diseases, biological therapies, immuno-suppressant, immune-modifying drugs, vulnerable patient groups, vaccine

Observations

Observed Node
Disambiguating Description
Measured Value
Measured Property
Observation Date

Persons

Persons (patients) self-identifying as having a confirmed clinical diagnosis of IBD and being resident in the UK at the first timepoint (between April and August 2020) and consenting to take part in the Registry's ethically approved COVID-19 IBD study. )

9800

COUNT OF PATIENTS

01 Apr 2020

Persons

Persons (patients) self-identifying as having a confirmed clinical diagnosis of IBD and being resident in the UK at the first timepoint (between April and August 2020) with ethical permission for data inclusion in an ethically approved COVID-19 IBD study

30000

COUNT OF PATIENTS

01 Apr 2020

Events

The medications reported by each participant as being taken at the first timepoint, plus other medications-related data specific to the medication type. This survey was repeated at the second timepoint in June 2021

39800

COUNT OF MEDICATIONS

01 Apr 2020

Findings

The vaccination status reported by each participant as at the second timepoint

9800

COUNT OF VACCINATIONS

30 Jun 2021

Findings

The work type reported by each participant at the second timepoint, particularly focused on healthcare profession work

9800

COUNT OF WORK

30 Jun 2021

Findings

The disease activity measure of control reported by each participant at the second timepoint

9800

COUNT OF ACTIVITY (DISEASE)

30 Jun 2021

Findings

The disease measure of control reported by each participant at the second timepoint as captured by the ICHOM-validated IBD-Control 8 instrument

9800

COUNT OF PROMS

30 Jun 2021

Findings

The responses to questions related to 2021 experiences by the participant captured at the second timepoint

9800

COUNT OF ABOUT 2020

30 Jun 2021

Persons

9800

COUNT

30 Jun 2021

Persons

Basic demographic information about the participant captured at the first timepoint. Enhanced demographic information was captured at the second timepoint from the consented group (9,800)

39800

COUNT OF DEMOGRAPHICS

01 Apr 2020

Persons

Medications associated with the first timepoint

39800

COUNT OF MEDICATIONS

01 Apr 2020

Persons

9800

VACCINATIONS

30 Jun 2021

Persons

9800

WORK

30 Jun 2021

Findings

Experience of healthcare during 2020-21 as judged by the participant, captured at the second timepoint

9800

COUNT OF HEALTHCARE EXPERIENCE

30 Jun 2021

Provenance

Source of data extraction
Electronic survey
Collection source setting
Home
Patient pathway description
Dataset collected during the initial COVID-19 phase with first data collection phase primarily in April 2020 and second in June 2021. Data collected by survey from people self-identifying as having a diagnosis of IBD and at risk from COVID-19 due to a combination of risk factors set out by the BSG
Image contrast
Not stated
Biological sample availability
None/not available

Details

Publishing frequency
Static
Version
2.0.0
Modified

08/10/2024

Distribution release date

30/06/2021

Citation Requirements
IBD Registry Ltd

Coverage

Start date

01/04/2020

End date

30/06/2021

Time lag
Not applicable
Geographic coverage
United Kingdom
Minimum age range
18
Maximum age range
100
Follow-up
Other

Accessibility

Language
en
Controlled vocabulary
ICD10
Format
text, csv

Data Access Request

Dataset pipeline status
Not available
Time to dataset access
Not applicable
Access method category
TRE/SDE
Access service description
Data may only be accessed in a Trusted Research Environment (TRE) approved by the IBD Registry, preferably the IBD Registry’s own TRE.
Jurisdiction
GB
Data use limitation
Research-specific restrictions,Project-specific restrictions
Data use requirements
Institution-specific restrictions,Project-specific restrictions,User-specific restriction,Time limit on use
Data Controller
IBD Registry Ltd
Data Processor
Data processor is AIMES (https://aimes.uk/) who manage the data platform where our health data is managed

Dataset Types: Health and disease, Treatments/Interventions

Dataset Sub-types: Oral and gastrointestinal, Respiratory


Collection Sources: Home